impact of support groups for patients with non-cystic fibrosis bronchiectasis

Conditions: Non-cystic Fibrosis Bronchiectasis

Summary: bronchconnect is a prospective trial to investigate the impact of support groups on health care related quality of life in those with noncystic fibrosis bronchiectasis (ncfbe). it has been well demonstrated that participation in patient support groups improves quality of life in those who suffer from interstitial lung disease and chronic obstructive pulmonary disease, but the impact is largely unknown for those who live with ncfbe, a chronic lung disease with rising prevalence with no targeted fda-approved therapy. ncfbe causes chronic cough, dyspnea, recurrent infections, and leads to anxiety and uncertainty. this study seeks to evaluate the impact of a virtual patient support group for patients with ncfbe through questionnaires to assess change of quality of life and anxiety, and exacerbation rates through clinical assessment.

non-cystic fibrosis bronchiectasis (ncfbe) is a chronic disease of the airways characterized by progressive damage to the airways that impairs the ability to clear mucus leading to repeated cycles of inflammation and infection. the condition is associated with chronic cough, sputum production, and exacerbations requiring antibiotics and/or hospitalizations, and as such can have a significant effect on quality of life. incidence and prevalence have been increasing in the past twenty years, with a concurrent worsening in socioeconomic burden. chronic cough and sputum production, use of devices for airway clearance, decreased exercise tolerance, and frequent exacerbations can all lead to embarrassment and isolation. per the european respiratory society (ers) guidelines, impairment in quality of life in patients with bronchiectasis is "equivalent in terms of scores on the st george's respiratory questionnaire (sgrq) to severe chronic obstructive pulmonary disease (copd), idiopathic pulmonary fibrosis and other disabling respiratory diseases." patient support groups are well established for those living with these other chronic pulmonary diseases, but their efficacy is not well defined for ncfbe. this is a single center prospective interventional non-randomized pre-post study to evaluate the impact of a virtual patient support group and multidisciplinary educational program for patients with ncfbe using a mixed-methods approach seeking to compare how support groups affect quality of life, anxiety, and exacerbation rates for patients living with ncfbe. participants will complete a series of questionnaires and will undergo assessment for severity of disease, comorbidities, and exacerbations before and after attending the group.

Eligibility criteria:
inclusion criteria: * diagnosis of bronchiectasis on computed tomography (ct) chest scan * bronchiectasis is the primary respiratory disease as determined by a clinician exclusion criteria: * age \< 18 years old * cystic fibrosis * traction bronchiectasis in the context of pulmonary fibrosis * solid organ transplant recipient * ability to provide informed consent * due to constraints of this pilot study, inability to engage in a full conversation in english

Keywords: support group patient education